Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Well my dealing with it well was BS. Cried twice yesterday getting blood tests and am suddenly shaking about neck scan today although I know this will be painless.

Hope everyone's day is a good as it can be

@nixnjj you poor thing. All the waiting around and the worry is awful, I am the same at the moment. I have cried at every appointment I've been to. Hope your neck scan goes ok, it's another thing ticked off but not nice xxx

@nixnjj here's a virtual hand hold from me. For me, scans and tests have been the points where I've felt most vulnerable and tearful. Once today's scan is done I hope you'll feel much better. Some great advice i had on the last thread was to remember "knowledge is power" - get this done today and it gives the drs the info they need to do their stuff. Thinking if you x

@MrsPnut, @Acinonyx2 - like KentishMama I have a very similar diagnosis. I'm so sorry we're all here but it's nice to have found company, iyswim?!

@KentishMama - thank you for the paclitaxel feedback. I am going to be having it weekly for 9 weeks (because the dose of docetaxel I've alreadt had was equivalent to 3 weeks of weekly paclitaxel). Except for the dramatic hospitalisation nonsense I found the docetaxel ok, as you say better than EC!, so I'm optimistic. I'm just worried about getting a temperature again because with weekly doses that will inevitably impact treatment. This was always going to be a bit of an issue living with germ vectors children I guess!

Belatedly, thank you so much to those who shared thoughts on mastectomy decision making with me on the last thread, it was so helpful. I think for now I am going to go with a single mastectomy, and then take my time to decide between either reconstruction, going completely flat, staying as I am, or further mastectomy and double reconstruction. It's too much to decide now. I don't think I've even really fully grasped i have cancer still at this stage!!

I'm going to phone the dr on Thursday as its the only day I can guarantee there won't be anyone else at home when they phone.
I'm struggling today :(

@Shrillharridan if they call back on your mobile can't you go to another room or outside to take it? Would be good to call today - or email?

You don't have to tell your family what it's about though? Pick something minor.

@FizzyOrange I’m getting used to bursting into tears now. I think I’m being slowly ground down and have very little resilience left.
I’m still trying to get a joined up decision about my infected ankle wound. But I’m making progress in that the chemo nurse has arranged a fracture clinic review and the GP surgery has arranged for a nurse to call about whether they will supply a swab. It will be a few days late but at least eventually there will be an answer. Meanwhile I am still lying with my leg in the air frustrated and anxious. Navigating the system when there are several issues needing a holistic approach is so difficult!
My answer has been to order wool to knit Christmas bobble hats for my family. At least I can do that lying down.
Love to all, whether tearful or not

@Lubballoo Tell me about the little germ monsters! I've got a cough I can't shift (NOT COVID!!!) and it's driving me crazy. Just started antibiotics just in case the germs are bacterial, but it's been over two weeks and my body is just refusing to do any healing during chemo... sigh

@Top it's tough isn't it? I'm only at the start and already feel worn out with it all. I'm pleased you've made some progress with your ankle and hope they can get it all sorted out soon. I love knitting and hearing what other people are making. What wool did you order and what colours? I love a bobble on a hat and have considered buying one of those kits to make the bobble - I usually use card and then have to trim the bobble to even it up! I have a blanket and some socks on the go at the moment.

@FizzyOrange, @TopOfTheCliff - I am also a knitter - currently knitting this shawl www.ravelry.com/patterns/library/parallelolamb with 5 shades of Erica Knight's Wool Local. I don't have the bandwidth for complicated patterns at the moment, now that I'm in the rhythm of how this one works I'm finding it very soothing!

@KentishMama the cough sounds really annoying, hope it clears soon!

PS @FizzyOrange I have various sizes of those pom pom maker things (got a cheap set online) and I think they're great, I've got a surplus of bobbles now from using up scrap wool! Eventually planning on using them to make some pompom bunting for my daughter but... so many unfinished projects!

@Lubballoo that shawl looks amazing! How long will it take to do? There's something really comforting about a handmade shawl or blanket, I think it is the texture. I might treat myself to some Pom Pom makers - when I trim my Pom Poms I find it hard to know when to stop and they end up really small! Bunting sounds lovely, I have a friend who knitted a bedspread and decorated the edges with Pom Poms. Before this I had only considered them for a bobble hat!

@Lubballoo I just love the blanket and the hilariously camp model!
@FizzyOrange the hats are just simple Aran mock cable knit but I think I will treat myself to the bobble making kit to finish them off. Good idea!
My latest project was a teddy bear suit for a new baby in Sirdar Snuggly Snowflake wool which is utterly fiendish as it knits into a textured surface and you can’t count rows or stitches. If you make a mistake it’s almost impossible to redo it. Steer clear!
I have lots of young friends having babies so am planning some little cardigans for babies which are so much fun to do. Radio 4 and knitting will see me through this time of trial!
@KentishMama it’s so annoying when your body doesn’t do it’s job isn’t it? I feel it’s letting me down.

I haven’t been here for a few weeks, mainly due to feeling really crap. Had two visits/stays in the hospital in between, just to spice things up a bit (one for constipation, the other for “unspecified” neutropenic sepsis). Had my last round of chemo last Friday, after a slight delay due to do my old friends neutrophils.

I have an ultrasound scan tomorrow, followed by a meeting with the surgeon on 1st Dec. I keep thinking what if they decide to give me more chemo before surgery??? The whole chemo experience has been a big pile of shit and I never, EVER want to go through it again.

The whole experience has been... well, it feels like my life has been on a complete hold since early August. Can’t go to the shops, can’t order take aways, can’t go to the gym/go running... So much so that I have had enough and am thinking of spending all my money at Christmas - who knows what is going to happen next Christmas?? Live for the moment, to the horror of my DH. But I have just had enough! Depending on the surgery date I may spend Christmas at the hospital but I don’t mind that- it has been such a spectacular crapfest of a year anyway. I just want my new biker boots, Christmas 🎄, all the food you can eat. I hope my sense of taste returns in time for the festivities, I haven’t been able to stomach any alcohol since I have started chemo, plus any other food tastes like sawdust. I miss my taste buds.

Sending much love to everyone but especially @Bloodybridget.

And sorry to hear about the continuing ankle saga, @TopOfTheCliff.

💐💐💐 I am feeling very emotional, sobbing every hour or so. Thinking of you all.

I'm going to phone drs tomorrow and try very hard not to cry so ds1 doesn't hear me.
I have horrible earache today just to add to the fun.

Just joining, after skulking in the background and reading posts.

Quick introduction as I'm only at the start. In August, I was told there was something sinister on a CT Scan I had. The scan was looking at my ovaries (2 years of investigation culminated in the all clear) but found something on my kidney. Bit of a shock. I'm young for kidney cancer and have 2 young kids. Anyway, it's been a nightmare from end to end and I still don't have a firm diagnosis. I could easily rant for hours about it as I'm still incredibly angry and all the screw ups mean I still don't have a definitive diagnosis.

Sorry, I think I just needed to type that out.

@balkanscot sending you as many hugs as I can. Neutrophils are bastards but you'll be ordering that takeaway before you know it - I had to wait until I had a semblance of taste as I didn't want to eats the money. Your bloods will pick up soon enough.

I had a terrible time with all my chemo. I'm still dealing with side effects from the BEAM I had as part of transplant. The only thing I will say is just give into feeling crappy - eat/sleep when you can. Get up when you feel you are able to - or don't. Just don't put any pressure on yourself. Xx

@KentishMama bloody cough. I've had several nasty ones (all related to previous bouts of neutropenic sepsis) and despite drinking cough medicine like it's water, the only thing that helped me in the end was codeine. I had tons of tablets in the house that they gave me for GCSF pain - but I know it doesn't agree with everyone

@balkanscot You've had such a rough ride! Chemo is awful even if you can manage to avoid hospital admissions, and the dead taste buds, general tiredness, etc etc are very hard to ignore after a while. I think @InOtterNews is right - maybe give in to feeling shit for a few days and have what I call a pity fest? Sometimes those make me feel better... And do spend all the money on Christmas. You can be frugal another time.

@inotternews I've actually been taking codeine with Ibuprofen and paracetamol for a few days last week, but don't think it stopped me coughing. It helped with bone pain though! I'm just hoping that the antibiotics do their job now. However my oncologist just called and told me off because they didn't do another Covid test when I was in the clinic yesterday. Not my fault. The unit doctor thought it was a waste of time because they tested me last week, when I had the same cough already... I wish all these doctors talked to each other. Sigh

@TopOfTheCliff and @Lubballoo, I can only knit, not purl so I don’t bother most of the time. It comes from being left handed but knitting right handed. I do crochet though, I have a blanket I need to finish.
@FizzyOrange I love those pom-pom makers, I have some pom-poms on stalks in a vase on my landing.
@KentishMama @balkanscot @InOtterNews Sorry you are all feeling shitty. All you can do is keep on keeping on. My thoughts are with you.

@seizethecuttlefish There are a few of us that seem to be having delays because of procedural issues. I have two different conditions and the difference between the two departments is huge. My first cancer was diagnosed on 6th November and still hasn’t been to MDT but my second cancer was diagnosed on 17th November and went to MDT on 23rd Nov.

@TopOfTheCliff bobble hats in Aran wool are always lovely - I think the Aran wool gives the hat a bit more bulk than normal double knitting. I have used that texture wool once for a jumper and never again - exactly what you say about the inability to count the rows or see a dropped stitch. I love making baby cardigans as they are quick to do and always look nice.

@seizethecuttlefish I can understand your upset and frustration. I am waiting for a formal diagnosis and it all feels so unreal.

@Shrillharridan hope you can get some help with the GP tomorrow. You will probably feel miles better once you've unloaded to him/her and got some advice.

Hi again. Other than fantastic service can anyone put a positive spin on this. Neck ultrasound yesterday, just received call for a MMR 9am Friday. So shocked I didn't ask who had requested it

On another not I envy all those able to knit, my nan tried, school tried and all I can do is triangles and holes.

Hoping today is a positive one for everyone

@Shrillharridan Hoping you get some help from your GP today.

@nixnjj I'm another failed knitter. I think an MRI is pretty standard for getting a good look at suspected lumps - they are a bit tedious though.

Big hugs to all those waiting for tests and answers - such a tough time. @FizzyOrange I am not a very pushy patient but I think I'd be calling and trying to push somebody - I'm getting impatient to hear your results myself! Perhaps they think it's not so urgent that it can't wait (hopefully) but there's still your mental state to consider.

No two people seem to have quite the same experience with chemo. I went into my first one with an open mind hoping I wouldn't be too sick - and it was a total shitfest frankly, both on the day - and the next 10 days. I'm glad to be feeling well this week - but dreading next week more than I dreaded the first one.
Yesterday morning I was thinking about next year - and that I will be doing chemo again after surgery up to Xmas 2021 - and I lay on my bed and cried like a baby. I'm just hoping that I will always have at last one relatively good week in the 3. Third chemo is Dec 21 just in time for Xmas. My commiserations to all fellow sufferers.

I flip flop a lot between reasonably cheery and teary - rather unstable.

@Acinonyx2 will it be the same type of chemo post-surgery? If it's different it might be a better experience? Thinking of you, it's so hard looking down a long treatment tunnel.

@nixnjj I found some of my scan bookings were astonishingly efficient and I think an MRI is quite standard too x

nix cancellation? I got one for my head mri.
Dr has px diagram to help me sleep.
Feeling so scared. Its exhausting.
Might phone macmillan tomorrow.

He wasn't my gp and was rather dismissive
"Well, have they found anything?"...
I've got to pop out later and will pop to my mums too.
Passes the time...